Maturitas 78 (2014) 77–78
Contents lists available at ScienceDirect
Maturitas journal homepage: www.elsevier.com/locate/maturitas
Editorial
Dementia care in an age of austerity
Across the board, in almost all developed countries, major political parties proclaim adherence to the economic imperative that government spending must be curtailed. In an atmosphere of crisis, political strategists now imagine “culling the sacred cows” of education and health care. In a new age of austerity, policy makers vie to be seen as champions who vanquished vested interests too willing to increase taxation to meet the costs of universal and comprehensive health services. Care of the elderly is a core value of all modern societies. Old people share fundamental rights to security, self determination and basic freedoms. In the absence of incapacity, they also share responsibilities to their community which they discharge through support of their family. They play wider roles through voluntary work and donations, and through political and religious activities. Overall, the balance between their economic and social contributions and their needs is not burdensome; their lifetime benefits to society hugely outweigh the costs to society of the care of the elderly. Like all other chronic disabling diseases of late life, the clinical dementia syndromes raise valid concerns about the financial costs of care that accumulate with advancing disease. The dementias differ from other disease of old age in many respects: foremost is that dementias are progressive, fatal illnesses. Setting aside their needs for assisted living, specialised nutritional support and management of unwanted behaviours, people living with early dementia can seem at first puzzled by the prospect of a difficult death. When a person has led a “good life”, there is always a hope for a “good death”. Society can provide well-trained staff, adequate accommodation and high standards to protect dementia patients from harm or exploitation but only at a cost. When effective dementia care meets these needs, the costs of care accumulate rapidly in ways that eventually threaten the capacity of developed countries to maintain comprehensive health services. The “age of austerity” has met the “silent epidemic of dementia”. An age of austerity can mean more than simple hardship. From a personal perspective, it can mean a time when guiding principles govern consumption of resources. Austerity can involve preferences for a more simple life with few indulgencies, consuming nothing to excess. Viewed from a wider public perspective, an age of austerity requires a balance to be struck between upholding moral values and the penalties of failing to maintain them. From their high moral ground, policy makers can self-justify constraints on the care of the elderly. Only rarely will they acknowledge negative social consequences of their actions.
http://dx.doi.org/10.1016/j.maturitas.2014.03.006 0378-5122/© 2014 Elsevier Ireland Ltd. All rights reserved.
The challenge is doubled when public revenues available to meet dementia care costs cannot increase in step with increasing demand for dementia care: including wages, infrastructural investment and, potentially, novel anti-dementia therapies. One approach is to move dementia care into a “low-cost” setting, planning “care packages” that appear to require fewer trained (and relatively expensive) support staff, remove costly medical components from treatment decisions and encourage families to support elderly relatives living with dementia. In favour of these approaches are data that suggest quality of life is better when those living with dementia are supported in this way. Acute concerns arise, however, when critical components of support are curtailed as, for example, when “cost-efficiency savings” are required that protect “front line staff” at the expense of administrative services. In this scenario, co-ordination between services is disrupted; personal care, social services, nursing and medical oversight are eroded and emergency care urgently (and expensively) needed to protect life. When a comprehensive and universal health service was first conceived in the United Kingdom, mental health services were considered inappropriate in the new system. Only after lobbying by the Royal Medical Psychological Association, was provision for mental illness accepted within the envisaged National Health Service (NHS). For dementia care, inpatient resources were provided within an NHS framework. Within 40 years, this arrangement was radically reformed. Without satisfactory debate, a new determining principle was introduced. Wealth accumulated by the elderly should pay for dementia care that would no longer be an illness requiring health services beyond diagnosis. By sleight of hand, personal wealth became a public asset to meet the costs of dementia care. Commercial enterprises, social work departments and charitable institutions responded to the challenge. Together they produced a dementia care system that is difficult for patients and families to navigate, sometimes treacherous to regulate with unnecessary obstructions to clinical research in dementia. As revenues fell, economic measures were taken to preserve NHS frontline services. This had two important effects on dementia care. First, within the NHS, resource allocation was made to the disadvantage of mental health services. Second, as mental health services experienced reductions in capacity to care for the mentally ill, their diminished services became pre-occupied with the care of the most severe mental disorders. Failing services
78
Editorial / Maturitas 78 (2014) 77–78
for adults were given priority and maintained as best as possible, mental health services for the elderly (including dementia) suffered. The road out of this desperate circumstance will not be easy to find. First, the foundations of our current values should be examined and reinforced. Second, dementia care services cannot be considered in isolation from other mental health services. If an autonomous route were feasible that separates all mental health services from the NHS, certain radical solutions become available. Not least are options to distinguish between mental health care that requires the integral involvement of expensively trained and remunerated medical staff and those components of care where medical staff play lesser but effective consultative roles. As dementia care services evolve, public policies will emphasise the importance of dementia delay as a prelude to primary prevention. New medical skills will be needed to achieve these goals. In the absence of an inexhaustible supply of physicians with relevant competencies, making best use of what numbers we have, is a first step on the path to a solution.
Competing interests There are no competing interests. Funding None. Provenance and peer review Commissioned and externally peer reviewed. Lawrence Whalley ∗ Crombie Ross Professor Emeritus of Mental Health, University of Aberdeen, Institute of Applied Health Sciences, Foresterhill, Aberdeen AB25 2ZH, United Kingdom ∗ Tel.:
+44 1314469159. E-mail address: [email protected]
Contributors 12 March 2014 This editorial was the sole work of Lawrence Whalley.
Contents lists available at ScienceDirect
Maturitas journal homepage: www.elsevier.com/locate/maturitas
Editorial
Dementia care in an age of austerity
Across the board, in almost all developed countries, major political parties proclaim adherence to the economic imperative that government spending must be curtailed. In an atmosphere of crisis, political strategists now imagine “culling the sacred cows” of education and health care. In a new age of austerity, policy makers vie to be seen as champions who vanquished vested interests too willing to increase taxation to meet the costs of universal and comprehensive health services. Care of the elderly is a core value of all modern societies. Old people share fundamental rights to security, self determination and basic freedoms. In the absence of incapacity, they also share responsibilities to their community which they discharge through support of their family. They play wider roles through voluntary work and donations, and through political and religious activities. Overall, the balance between their economic and social contributions and their needs is not burdensome; their lifetime benefits to society hugely outweigh the costs to society of the care of the elderly. Like all other chronic disabling diseases of late life, the clinical dementia syndromes raise valid concerns about the financial costs of care that accumulate with advancing disease. The dementias differ from other disease of old age in many respects: foremost is that dementias are progressive, fatal illnesses. Setting aside their needs for assisted living, specialised nutritional support and management of unwanted behaviours, people living with early dementia can seem at first puzzled by the prospect of a difficult death. When a person has led a “good life”, there is always a hope for a “good death”. Society can provide well-trained staff, adequate accommodation and high standards to protect dementia patients from harm or exploitation but only at a cost. When effective dementia care meets these needs, the costs of care accumulate rapidly in ways that eventually threaten the capacity of developed countries to maintain comprehensive health services. The “age of austerity” has met the “silent epidemic of dementia”. An age of austerity can mean more than simple hardship. From a personal perspective, it can mean a time when guiding principles govern consumption of resources. Austerity can involve preferences for a more simple life with few indulgencies, consuming nothing to excess. Viewed from a wider public perspective, an age of austerity requires a balance to be struck between upholding moral values and the penalties of failing to maintain them. From their high moral ground, policy makers can self-justify constraints on the care of the elderly. Only rarely will they acknowledge negative social consequences of their actions.
http://dx.doi.org/10.1016/j.maturitas.2014.03.006 0378-5122/© 2014 Elsevier Ireland Ltd. All rights reserved.
The challenge is doubled when public revenues available to meet dementia care costs cannot increase in step with increasing demand for dementia care: including wages, infrastructural investment and, potentially, novel anti-dementia therapies. One approach is to move dementia care into a “low-cost” setting, planning “care packages” that appear to require fewer trained (and relatively expensive) support staff, remove costly medical components from treatment decisions and encourage families to support elderly relatives living with dementia. In favour of these approaches are data that suggest quality of life is better when those living with dementia are supported in this way. Acute concerns arise, however, when critical components of support are curtailed as, for example, when “cost-efficiency savings” are required that protect “front line staff” at the expense of administrative services. In this scenario, co-ordination between services is disrupted; personal care, social services, nursing and medical oversight are eroded and emergency care urgently (and expensively) needed to protect life. When a comprehensive and universal health service was first conceived in the United Kingdom, mental health services were considered inappropriate in the new system. Only after lobbying by the Royal Medical Psychological Association, was provision for mental illness accepted within the envisaged National Health Service (NHS). For dementia care, inpatient resources were provided within an NHS framework. Within 40 years, this arrangement was radically reformed. Without satisfactory debate, a new determining principle was introduced. Wealth accumulated by the elderly should pay for dementia care that would no longer be an illness requiring health services beyond diagnosis. By sleight of hand, personal wealth became a public asset to meet the costs of dementia care. Commercial enterprises, social work departments and charitable institutions responded to the challenge. Together they produced a dementia care system that is difficult for patients and families to navigate, sometimes treacherous to regulate with unnecessary obstructions to clinical research in dementia. As revenues fell, economic measures were taken to preserve NHS frontline services. This had two important effects on dementia care. First, within the NHS, resource allocation was made to the disadvantage of mental health services. Second, as mental health services experienced reductions in capacity to care for the mentally ill, their diminished services became pre-occupied with the care of the most severe mental disorders. Failing services
78
Editorial / Maturitas 78 (2014) 77–78
for adults were given priority and maintained as best as possible, mental health services for the elderly (including dementia) suffered. The road out of this desperate circumstance will not be easy to find. First, the foundations of our current values should be examined and reinforced. Second, dementia care services cannot be considered in isolation from other mental health services. If an autonomous route were feasible that separates all mental health services from the NHS, certain radical solutions become available. Not least are options to distinguish between mental health care that requires the integral involvement of expensively trained and remunerated medical staff and those components of care where medical staff play lesser but effective consultative roles. As dementia care services evolve, public policies will emphasise the importance of dementia delay as a prelude to primary prevention. New medical skills will be needed to achieve these goals. In the absence of an inexhaustible supply of physicians with relevant competencies, making best use of what numbers we have, is a first step on the path to a solution.
Competing interests There are no competing interests. Funding None. Provenance and peer review Commissioned and externally peer reviewed. Lawrence Whalley ∗ Crombie Ross Professor Emeritus of Mental Health, University of Aberdeen, Institute of Applied Health Sciences, Foresterhill, Aberdeen AB25 2ZH, United Kingdom ∗ Tel.:
+44 1314469159. E-mail address: [email protected]
Contributors 12 March 2014 This editorial was the sole work of Lawrence Whalley.
